Beautiful Miracle
Had a long day at Sacred Heart last week, but all the news was good. Weight gain is good enough over all that the surgeon does not have to do the reflux repair just yet. The hope is that with age the reflux will get better, and they will re-evaluate about doing the surgery around 9 months old, or if weight gets too off track. Until then, meds will help with feeling better, and mom will just have to continue cleaning up after all the spitting up - much better than another surgery! He explained how GERD (gastroesophageal reflux disease) was inevitable in her case because her make-up is just different. She has Gortex in place of muscle for a diaphragm. Normally the muscle helps keep food down. They did another chest xray to check up on that interesting diaphragm, and while the experience was horrific because of the measures they need to take to get a proper xray from a wiggly infant, the results were positive. We go back to see the surgeon again in 2 months. They did a renal-ultrasound since she left the NICU with unexplained hydronephrosis (swollen kidneys) and it has resolved as they expected. Saw the cardiologist, and he did an echo of her heart. There are still two small wholes in her heart. One between the atrial chambers and one between the ventricle chambers. They are not affecting her, and they expect them to close - we go back when she is 1 year old to make sure that they have. She will be weighed again on the 26th, and I am aiming for a whoppin' 10lbs, though 9lbs 13oz is the main goal. We were evaluated at a feeding clinic earlier last week and they upped the calories of her milk and increased some of her medicine doses to help us meet our goals. It is a blessing that Allison is doing so well - she is a beautiful miracle!
Getting Better
Allison had her follow up with the surgeon last week and the xrays still look good. He wants to see her back in another month. At her last weight check she finally gained what they are expecting from her. The first few weeks she was behind because of the allergies and reflux issues. She is now on Prevacid and Zantac and a special medical grade hypoallergenic formula that we have delivered monthly called EleCare. It's $132 a can! Thank goodness the insurance covers it.
But, I think we are getting this little girl finally figured out because she is finally gaining weight and we are crossing our fingers that it will continue that way. We are going in weekly for weight checks and she needs to be gaining an ounce a day, so 7oz per visit. The last visit she did exactly that. I keep hoping for a visit where she exceeds expectations - but meeting them will do. If over the next month Alli does not meet her weight requirements, her surgeon wants us to consider fundoplication surgery to help her with her reflux. Another surgery is not something we want to go through right now, so hopefully the meds will keep working for her like they have this week. Its been a rough first month home, but things seem to be getting easier - and its definitely better than her being stuck at the hospital.
But, I think we are getting this little girl finally figured out because she is finally gaining weight and we are crossing our fingers that it will continue that way. We are going in weekly for weight checks and she needs to be gaining an ounce a day, so 7oz per visit. The last visit she did exactly that. I keep hoping for a visit where she exceeds expectations - but meeting them will do. If over the next month Alli does not meet her weight requirements, her surgeon wants us to consider fundoplication surgery to help her with her reflux. Another surgery is not something we want to go through right now, so hopefully the meds will keep working for her like they have this week. Its been a rough first month home, but things seem to be getting easier - and its definitely better than her being stuck at the hospital.
At Home
Allison was discharged from the hospital Monday afternoon. We had a wonderful night together. It is so nice to be able to hold her wire free anytime day or night. She is doing decently with her feedings. They told us she must have at least 50mL every 3 hours and that 60mL is best. She takes about 55mL each feed. They have me mixing special formula and vitamins in with her breastmilk to add calories and give her immune system a boost, plus extra iron for her anemia. I have been pumping bottles, mixing bottles, washing bottles or feeding her the bottles basically non-stop since I got home.
Unfortunately we had to make an emergency doctor's appointment for her this morning because she was having bloody stools. Since her bum looked really good to me and there was a fair amount of blood, I decided it was not a simple fissure and that I better get her in. They had me bring a sample in and the doctor has determined that she has a severe milk allergy. The milk fortifier I have been mixing in for Allison is milk based and I have of course been eating dairy products. All her insides are irritated which is where the blood is coming from. They have me now on a strict - no milk of any kind - diet. I got home and looked at our labels...there is some form of milk in almost everything so this is going to be tough. The Doc said it will be. They also switched the fortifier and hopefully she will get better over the next week or so with the change.
Besides that everything is good and we are very glad to have her home. We will be visiting the pediatrician once a week for a while, and we have surgery and cardiology follow ups in the following months. They will be making sure that her diaphragm patch is holding up well and checking to see if the little whole she has in her heart has closed up. As of now it is not causing her any issues, just a simple murmur - and they suspect it is going to close as she grows since it is so small.
Until we have any new news I wont be updating - I will simply be enjoying my perfect little angel and trying to keep up with her high maintenance little schedule. Thank you all for your love and support and for following our story.
Unfortunately we had to make an emergency doctor's appointment for her this morning because she was having bloody stools. Since her bum looked really good to me and there was a fair amount of blood, I decided it was not a simple fissure and that I better get her in. They had me bring a sample in and the doctor has determined that she has a severe milk allergy. The milk fortifier I have been mixing in for Allison is milk based and I have of course been eating dairy products. All her insides are irritated which is where the blood is coming from. They have me now on a strict - no milk of any kind - diet. I got home and looked at our labels...there is some form of milk in almost everything so this is going to be tough. The Doc said it will be. They also switched the fortifier and hopefully she will get better over the next week or so with the change.
Besides that everything is good and we are very glad to have her home. We will be visiting the pediatrician once a week for a while, and we have surgery and cardiology follow ups in the following months. They will be making sure that her diaphragm patch is holding up well and checking to see if the little whole she has in her heart has closed up. As of now it is not causing her any issues, just a simple murmur - and they suspect it is going to close as she grows since it is so small.
Until we have any new news I wont be updating - I will simply be enjoying my perfect little angel and trying to keep up with her high maintenance little schedule. Thank you all for your love and support and for following our story.
Scheduled For Home
As of yesterday, Allison is officially scheduled to come home on Monday! She seems to have picked up a little bug that is causing her a cough and some diarrhea, but as long as she does not get worse then she will be home Monday afternoon. Our discharge is scheduled to start Monday morning, and they will be loading us up with follow up appointments and information for caring for Allison's special needs. We are so excited and can hardly wait. I have spent the day cleaning and setting things up at home to be ready for Allison when she gets here. I will update again after we get settled in.
Minor Set Back
We had a little scare with Allison Tuesday night. She had some bloody stool which is a cause for alarm after all that she has been through. They stopped her feedings and put her back on an IV. They did several x rays and took lots of blood samples and found nothing. They ran a viral scan and did an ultrasound and still came up with nothing. The final say is that she simply had an anal fissure which is very common among breast fed babies since they fill their diapers quite often and abruptly. She is back to eating today, but they are going to watch closely to be certain that her insides are all okay and functioning well. Thank goodness it turned out to be nothing, and hopefully all the poking, prodding, and not allowing her to eat yesterday will not affect the progress she has made with her feeds. Crossing our fingers that she will be coming home very soon!
First Full Feed 5/5/11
To celebrate Cinco de Mayo Allison ate her first full feeding all on her own! Actually she gobbled down 55mL and a full serving for her based on weight is 51mL - Woo Hoo! She has consistently been taking 25-30mL most of the time now so she is almost there. They took out her PIC line (a special kind of IV) earlier this week, so she was able to have her first real bath on Tuesday. She really liked it! She did not at all care for the wipe downs she had been getting up until now but she loved soaking in the warm water and getting rubbed down. Who wouldn't like that? She now weighs 5lbs 15.7oz - almost 6lbs! Hopefully they will start discussing discharge with us soon. Until then, keep Allison in your thoughts and pray that she continues to do as amazingly as she has.
No More Hook Ups
Allison is now officially free from all medicines and gadgets! They took her off of her oxygen, antibiotics, and nutrition IV's yesterday. The only things she still has on her are monitors and her nasal feeding tube for the breast milk she is unable to finish eating herself. It is so nice to be able to see her beautiful face without the oxygen tubing. It is also wonderful not to have to be concerned when you hold her about her special IV line. So truly all that is left before she comes home is to get her taking full feedings on her own. She takes anywhere from 10 to 30mL each time on her own and a full feed for her is 45 to 50mL so she is getting there. Hopefully the day will come soon that she is strong enough to finish her whole serving. With all the breast milk she is getting now she is up to 5lb 12oz! She was 5lb 2oz at birth, so she is growing great. With growth she should gain the strength to eat.
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