07.24.09

Wow, it's been quite a while since this has been updated - alot has been going on with little Adam Larbi! Adam is now almost 7 months old!!

Will update soon and send more pictures.He is doing very well, thanks be to GOD! He had surgery to put a shunt in, will write later about his progress on this and other things going on with Adam.

He sure does keep Mommy & Daddy very busy, but he definitely lights up their life with each smile and coo! :)

04/01/09

With Adams first day’s home, he adjusted well. Mommy and Daddy have tried to keep him on the same schedule he was on in the NICU with his feedings etc., in hopes that Adam would transition from his life there to home with few problems. He seems comfortable and Mommy and Daddy feel that Adam has adjusted well.

Adam had his first Pediatrician visit last week. He was given his two month vaccinations. Even though he was still in his gestational age (not quite 40 weeks as a full term baby), the doctor said studies have shown that a full term two month baby and a two month preemie both responded the same overall.

Adam did have some difficultly with one of the vaccines that was given orally. The nurse who gave the vaccine to Adam did not know of his problems (dropping his heart rate while eating). He stopped breathing for close to one minute and then his color came back. This was very scary, but isn’t something Suzie was unaware of. He did this a couple times in the hospital while eating. Although it was scary, Adam recovered and did fine. His temperature went up a little that night but the children’s Tylenol seemed to help him.

When Adam left the NICU, he weighed 5 pounds, 2 ounces. He weighed in this visit at 5 pounds, 8 ounces and 18 inches long. Routinely, Adam’s head was measured as well. His pediatrician wants him to come back this week to have his head measured again. There is a possibility he may need a shunt put in his head in the future. Soon he will visit the neo surgeons and they will make the final determination on that.
Adam has had some difficulty going to the bathroom. This is not all that uncommon for little babies; however, Adam developed a hernia (the walls of his stomach separate while straining). This causes his little intestines to poke thru causing his belly button to protrude out. His pediatrician said there is no need for concern now as long as his belly button will push back in while he is not straining. Most hernias will self resolve; however, if it doesn’t then surgery will need to be done, God forbid. However, he must be a lot older first anywhere between 1 and 2 years old.

Adam failed his left ear exam three times, but he is scheduled to go back this week. Also, he is scheduled to see an ophthalmologist. In addition, physical therapy will be starting soon for Adam. They will come to his home to work with him. We will post updates on these visits soon.

Adam has started to reach out a little to grab things. His doctor gave a list of things Adam should be doing this month. Typically preemies are slower with these. Just a few days ago Adam did something we think is wonderful. Suzie put red, white, and black material on his bouncy and his basinet. She got this idea from someone while Adam was still in the hospital. About two days ago, Adam started to reach out for the fabric. At first Suzie thought he was just moving his arms, but she continued to watch him and each time it was a controlled touch, he will rub it and try to grab it! The same day while she was feeding Adam, he reached up and touched her face, twice. :)

Mommy and Daddy are very happy for their little boy; this is another milestone that they were waiting for him to reach that early on was told he may not be able to.
Thanks God for everything.

03/18/2009

Hello everyone! I wanted to hop on here right quick and give everyone an update on our little Adam Larbi!

Adam is now home with his Mommy & Daddy! They released him on 03/18/09.

The road to him being released was not easy. A couple weeks ago Adam suffered from an infection (e-coli) which was treated by antibiotics for a little over a week. He responded well and very quickly. However, it was very scary. He stopped breathing and turned blue twice during that time. Thank God - he bounced back and recovered very quickly.

I do not know all the details because so much happened in such a short period of time, but now Adam is very healty and is at home. Thanks be to God first and foremost!

Thank you for all your prayers!

This blog will not end with this post! I'll be posting updates on how he is doing at home with pictures, etc. :)

03.06.09

-Thanks God Adam reached the mile stone of 4 pounds two days ago and now he is out of the incubator and in an open crib. He is wrapped "As snug as a bug in a rug". He has a hat and full clothes on and 2 or 3 blankets. Because of the weight Adam no longer needs the pulse probe on him. He has one to monitor his heart rate and his respiratory rate.

-His Doctor is pleased with Adam keeping his temp that he feels tomorrow Adam will be sent to another floor to have an MRI on his brain since Adam is more mobile. The MRI will help to get a better view of what is going on in his brain more so than with an Ultra Sound. Adam will be given a drug to sedate him. It is very important that Adam not move during this test.

-Adam had another lab to check his red blood cells, the results came back and it is still looking good.

-Suzie was shown how to give Adam an infant massage on his little hands and feet and how each part on his hands and feet sends signals to different parts of the body when pressed. Adam seemed to relax and enjoyed the massage.

-Adam is still being feed gravity with some of his feedings. Right now he is getting about 2 bottles per shift and eating 34 cc's every feeding. Because of Adams weight gain his calories have been decreased to 24 from 30. There are 30 cc's in a ounce. Of course taking the bottles instead of the gravity feedings 2 times a shift can increase at the Nurses digression, if Adam is "routing around" for the bottle or is very alert it is best to give him the bottle. If Adam is too tired and a bottle is given to him, he will drop his heart rate for example from 160 something to 70 very quickly. The goal is to wean Adam off the gravity feeding completely. This is a must for him to go home but it can not be rushed. To coordinate sucking, swallowing, and breathing, it just takes time to learn.

There are a lot of criteria that must be meeting before Adam goes home:
Being 4 1/2 pounds and showing a pattern with increasing his weight, Eating and digesting his food, breathing on his own, maintaining his body temp, and no apnea spells. Right now, thanks be to God, Adam is handling the "Road Home" well. More to follow about this very soon…

02/23/2009

Hi everyone! Here’s the newest update on our little Adam Larbi! Adam was getting doses of caffeine because of his apnea spells. Those doses have been cancelled because the apnea spells are now decreasing. Adam is keeping his food down well and is getting 25 cc’s every few hours. Adam is being fed through a tube still; however, just the other day he started being fed from a bottle twice a day. He’s doing so good taking from the bottle. He has now trained himself to be coordinated in sucking, swallowing, and breathing at the same time!! WAY TO GO ADAM!!!!

Adam’s eye medication has been discontinued, so that’s good as well!

Another ultrasound was done on Adam’s brain. There is no change and another ultrasound will be completed in two weeks. Adam’s second eye exam was given with no change – so everything is progressing as it should. His hearing exam will be in a few weeks.

Our little munchkin is now known as a “step down baby” (not real sick) thanks God, so he was moved to another location in NICU. :)

Little man weighs in at 3.3 pounds (pretty close to 1500 grams, but not quite there yet). Once he gets to 1500 grams, he is allowed to wear clothes from home as long as they open or zip in the front. His primary nurse said "almost time to play dress up"! :) I know momma is very happy about that!

Once Adam is 4 pounds he will be moved to an open crib; however, he must be able to maintain is body temperature with clothes, blanket, and hat on. He will be monitored every hour to make sure this is happening, but if he cannot maintain his temperature – then he will have to move back to the incubator again.

A lab on Adam’s blood was performed to check his red blood cells since his last transfusion. The numbers are looking great! Another lab will be checked again next week.

02/13/2009

Suzie received a call from Adam's doctor recommending another blood transfusion. Adam's PCU and retic was better; however, Adam has not been gaining the weight that he should. His vitals were too high and his little heart had to work very hard to pump what little blood he had thru his body. Even though his calories have been increased with each feeding, this is a lot of the reason he was not gaining weight. Adam was just burning them off too fast.

The blood transfusion is given over the course of two days. It takes about four hours to put 11 milliliters into Adam for a total of 22 milliliters. The first day the transfusion went into a blood vessel in his scalp the second one was given thru his left foot. Little man looked exhausted. It has been two days since the blood transfusion and he is still so tired.

Adam now weighs 2.8 and 3/4th pound. His color looks a lot better now.
The antibiotic given in his eyes have been discontinued. Adam received the second round of his TB shoot today.

02.10.09

Adam weighs 2.4 and a quarter pounds and is eating 19 cc's every three hours and is getting 30 calories per feeding. He is still underweight for his age, so hopefully those calories will help him gain weight. It takes little Adam about 30 minutes to eat his 19 cc's. He gets two vitamins a day through his feeding tube as well. Included in those vitamins is iron, which helps him grown stronger and also ensures he will not become anemic.

Along with vitamins twice a day, Adam is also getting antibiotics in his eyes because an eye infection keeps occurring. He is also getting caffeine twice daily to help increase Adam's energy level in order to keep the amount of apnea to a minimum.

Suzie says, "Adams PCU went to 37 and his white blood cells rose. A few factors can cause this. One his bilaribbon was coming back. Another lab was taken to double check the PCU. Blood needs to be drawn for this and Adam did cry a little bit, it broke my heart. The doctor was preparing to order another blood transfusion, but wanted to double check the previous lab. Adam cannot produce his blood right now on his own, if the previous lab was correct Adams apnea spells would increase more and they had increased and also his getting sick after eating would have increased more and they also had increased but not to the amount that was so worrisome to the Dr or for his PCU to go to 37. The results came back and tested negative for the bilibribbon, they look for the retic and his was 6.6 , this is good and his PCU dropped back to 27. It was determined he was dehydrated, which caused the PCU test to go to 37. There are always increased risks involved with a blood transfusion, so thank God this did not have to happen. Adam will be tested again next week and if God bless the results will be okay where the blood transfusion will not be needed."

The results for the Ultra Sound on Adams brain scan are in. There is a 2 cm cyst on the left side where the grade 4 bleed occurred. Considering the size of Adam's little brain, this cyst is quite large. This cyst cannot be removed - at least this is what his doctor is saying now. This cyst is not normal or abnormal, being a brain bleed like Adam had, a cyst does usually form. So this is not abnormal to have happened. However, the doctor explained, "this is a wait and see" so the abnormal is we do not know what damage God forbid might occur. Adam has significant scarring on both the right and left side of his brain at the location where his brain controls his muscles. A brain bleed such as Adam had the percentage of having significant disabilities such as cerebral palsy is common. As with any disability there are varying degrees from minor to severe. The doctor told us that Adam has his age on his side. Being he is still developing, his brain has not "trained" itself. So, if a brain signal tries to go to a part of the brain that has the scarring and it can not send the signal it will "reroute" and send the signal some where else in his little brain. Suzie corrected the doctor, "No, Adam has God first and then his age on his side. Whatever his Creator wills for him, his Mommy and Daddy are here for him every step of the way, if God wills for it to be."

Thank you for all the continuous prayers.