Well, we have known that Allison has had some trouble holding her head up straight, but over time it has gotten more severe. She will be starting some more intensive physical therapy this coming Monday to help her gain the strength to overcome this condition that they call torticollis. Hopefully she does well.
She has also been moving in ways that are a bit concerning to the doctors. She is scheduled for an EEG (Electroencephalography) on the Thursday that follows to rule out possible seizures.
Allison will also be going in to have her hearing and sight checked as is routine for babies who had a rough start like she did.
We are going to have a very busy couple of weeks ahead of us, but hopefully all appointments and therapies go well!
Upswing
Well, all the testing came back normal. It turns out that the swallow study they did was not the one that the GI doctor wanted, so I think they are scheduling us for that again. But Allison seems to be eating better and had really great weight gain last week. Hopefully it was just a fluke month and she will get right back on track with growing. Her therapist has given us exercises to work on too to keep Alli on track with meeting her physical milestones. She was getting behind, but the therapist said she is seeing tons of improvement since we started the workouts. So all in all, it looks like we are back on the upswing with things! We visit the pediatrician again on the 9th. Hopefully Alli's good weight gain will continue and there will be nothing more to discuss :)
Failure to thrive.
Allison has been unable to gain weight since her last exam. The doctors have her scheduled for an upper GI study on Wednesday to check for issues with swallowing, and an Echo on Monday to make sure her heart is doing okay. She had a gastric emptying scan done last week and the results came back normal so her tummy seems to be working properly. We are hoping we get things figured out quickly so we can get this girl eating!
Amazing Girl!
Had our follow up appointment with Dr. G (Alli's Surgeon) today. He looked at her chest x-ray and told me that she is perfect! :) I can hardly believe it, but he said that we no longer need to follow up with him unless we have concerns. Her lungs have properly filled her chest cavity, her heart has perfectly moved into the correct position, and her diaphragm has just the right symmetry. She hardly vomits at all anymore, and is growing great! Her lungs are still fragile so we need to keep her from getting sick, but that is standard pediatrician stuff. So now all she will have are her normal well baby checks with Dr. Prince (local pediatrician), just like any other baby. When she is 1 the cardiologist will see her to make sure the wholes in heart have closed, but other than that we should not have to go all the way to Sacred Heart anymore. Her therapists will continue to visit her once a month to make sure she stays on track with her milestones, but so far that is not at all a concern as Allison has been exceeding expectations. We are so blessed to have such a strong little girl. What an amazing come back! Allison is the most amazing girl!
Breathing Issue Update
We got a call from Allison's pediatrician this morning to come in for a follow up to her ER visit the other night. It turns out that after reviewing the x-rays she has early stages of pneumonia. We are so glad we took her in the night we did, because if the pneumonia had developed further it would be life threatening for Alli. It would have been easy to miss because overall Allison's health seems fine - just the one breathing struggle incident. It is uncertain what caused the pneumonia since she has not been ill, but any irritation to her fragile lungs can trigger it. She is now on an antibiotic which should clear things up fairly quickly, but this just shows us how careful we will need to be with the upcoming flu season.
Quite a Scare! 9/11/11
Allison gave us quite a scare last night. She wasn't able to breathe. For at least 15 minutes she was unresponsive and gasping for air. We rushed her to the ER, it was 11 o'clock at night. Before we arrived the dyspnea subsided and the doctors were not able to find anything wrong. They did a chest x-ray and all. They sent us home after basically 3 hours of waiting around for no information, and she has been totally fine since. We are unsure what happened and are praying it will not happen again. Fortunately she has an appointment with her surgeon on Wednesday. Hopefully he will have some answers for us.
Keeping Alli Safe!
Dear Family and Friends,
We are writing regarding a very important matter, Allison's health and safety. For those of you who plan to visit us over the next few months, please take a few minutes to read this letter.
We would like to share an important topic recently discussed with us by Allison's doctors. If you are not aware of RSV (Respiratory Syncytial Virus) you are of the majority. Nearly every child has had the virus at least once by age two. For babies born full-term and without complications, it is typically a bad cold. But, the highest risk factors for contracting RSV and developing complications like pneumonia, bronchiolitis, and other sometimes fatal complications are; being born premature, being born with a lung condition, or being born with a heart condition. Allison was born with all three.
Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping Allison safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands, and up to twelve hours on objects. If Allison contracts RSV she will likely be hospitalized since she does not have the necessary immunities to fight off infection like the rest of us. Last year alone, over 125,000 infants in the US were hospitalized due to complications from contracting RSV.
That being said, we'll be asking our visitors to follow a few guidelines to help prevent Allison from contracting RSV or other illnesses.
Please be prepared to take off your shoes and wash your hands upon entering our home.
Please refrain from coming over if you are currently experiencing any illness symptoms, or have been in close contact with anyone showing symptoms.
If you are a parent of young children, please refrain from bringing them into our home during RSV season. The most common form of transmission is from child to child.
If you smoke or live with someone who smokes, please change your clothing and refrain from smoking prior to visiting. Allison's lungs are very sensitive to smoke and even passive exposure increases her risk of contracting an illness.
If at all possible, get a flu shot at the start of the season.
Please do not let these precautions frighten you or stop you from making contact with our family. They are simple precautions that every loving parent with a fighter like ours must take during this season.
Unfortunately this also means that there will be events during RSV season that we will be unable to attend with Allison. If you know that either young children will be attending, or that the number of people attending is too large to screen, please advise us of this. Please do not be offended if we have to turn down your invitation, as we are simply trying to keep our baby from going back to the hospital.
We have been advised that Allison's lungs will be fragile until she is 2-years of age. We hope you understand, and we appreciate your help in keeping Allison RSV-free until then.
Best Regards and Warm Wishes!
-Allison's Loving Parents
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.
No Restrictions.
She has been nippling her entire 10mL on her own so they have taken off her restriction. So starting today she can take as much milk as she wants. If she is too tired they are still giving her occasional feedings through her nasal tube. When they help her out, they are increasing each feeding by 1mL. She is on a 3 hour schedule 3,6,9,12 around the clock. She was pretty sleepy today and only took 5 or 6 on her own at her feedings, but they topped her off through the tube and she was up to 13mL at her 6pm feeding and tolerating it well.
Feedings Update.
They have bumped her up to 10mL of breast milk every three hours! She is nippling 5 or 6 on her own each time...unless she gets a crummy nurse. Most of the nurses are great, but some are lazy and take advantage of the fact that she has a feeding tube and don't take the time to give her a chance to try eating on her own. I always get frustrated when they do that. Anyway, she is doing really great and we are so happy that she is tolerating the feedings well. She is still only at about a twelfth of what a well baby eats, but she is getting there.
One Step Closer.
The doctors decided to start her on breast milk today. She gets 5mL every 4 hours. She nipples what she can from breast or bottle, then they give her the rest down a nasal feeding tube if she can't finish it. So far she is tolerating it okay, only spitting up small amounts occasionally. Once she is getting enough, they can start weening and eventually take out the IV's she has for nutrients- which is one more machine we want to see gone. One step closer to coming home.
The Next Big Hurdle.
It is looking like Allison's next big hurdle will be figuring out how to suck and swallow while doing her rapid breathing. Imagine trying to drink a glass of milk after you just sprinted a mile. She is now two weeks old so missed out on those initial days, plus had tubes down her throat which may have caused her to develop a slight aversion to things in her mouth. We really take knowing how to eat for granted.
The goal the doctors have set for her is to drink and keep down 5mL of Pedia Lite (inhanced water for babies, sort of like Gatorade for us) two times in a day before they give her breast milk. So far she has drank the whole amount once but threw it back up, and half the amount three times and kept that down twice - so she is trying. The worry is that if she can't keep things down she will need another surgery to repair the muscle at the top of the stomach that keeps the food from coming back up. Also, if she can't get the feeding down, she will have to have a surgery to put in a G-tube for feeding. So, we really want to see her meet her feeding goals. The nurses have told me that they will give her lots of time and chances to try feeding before those decisions are made which is good, but knowing there is a chance that more surgery is needed is scary.
Besides the feeding hurdle that Alli girl is being faced with, she is doing really well. All of her vitals look good, and she is still on the IV that gives her the nutrients she needs directly into her blood until they figure out if her tummy is working. The cultures they took to check for infection have not shown any growth so that is good. They will make a decision today about the antibiotics she is on. They may finish them out just in case. She is going over 12 hours a day without pain medications which is great! They have been trying to get her weened off all of that. And she is as cute as can be :) It is has been really nice to be able to hold her all the time now and she continues to look better and better everyday.
I will continue to update with the progress she makes or if any big changes take place. Please continue to keep her in your thoughts as she continues her recovery.
The goal the doctors have set for her is to drink and keep down 5mL of Pedia Lite (inhanced water for babies, sort of like Gatorade for us) two times in a day before they give her breast milk. So far she has drank the whole amount once but threw it back up, and half the amount three times and kept that down twice - so she is trying. The worry is that if she can't keep things down she will need another surgery to repair the muscle at the top of the stomach that keeps the food from coming back up. Also, if she can't get the feeding down, she will have to have a surgery to put in a G-tube for feeding. So, we really want to see her meet her feeding goals. The nurses have told me that they will give her lots of time and chances to try feeding before those decisions are made which is good, but knowing there is a chance that more surgery is needed is scary.
Besides the feeding hurdle that Alli girl is being faced with, she is doing really well. All of her vitals look good, and she is still on the IV that gives her the nutrients she needs directly into her blood until they figure out if her tummy is working. The cultures they took to check for infection have not shown any growth so that is good. They will make a decision today about the antibiotics she is on. They may finish them out just in case. She is going over 12 hours a day without pain medications which is great! They have been trying to get her weened off all of that. And she is as cute as can be :) It is has been really nice to be able to hold her all the time now and she continues to look better and better everyday.
I will continue to update with the progress she makes or if any big changes take place. Please continue to keep her in your thoughts as she continues her recovery.
Making Progress 4/19/2011
Today was a big day for Allison. She finally got her first sponge bath and was moved from her raised, heated bed for critical babies into an open crib. She had the suction tube removed from her stomach and has been given the go ahead to start small feedings of PediaLite. If the feedings go well they will start her on breast milk. Because her breathing is so rapid with her one little lung, they are uncertain if she will be able to suck and swallow and believe it is likely she will be put on a feeding tube, but they are trying bottle first. Dr. Georgeson (her surgeon) said that babies with defects as severe as hers usually go home on a feeding tube and oxygen. What she needs now is to grow, so struggling to eat and breathe is not something she can afford to do. She uses a lot of energy breathing so getting enough calories is very important. Eventually she will grow out of needing the extra help.
I got to hold her today. Twice! And when Steve came from work he was able to hold her for the first time too. She also went most of the day without any pain medications. What a strong girl! Dad picked out a cute new cap for her to wear with butterflies. I think she likes it very much :) We were told she may be showing signs of possible infection so they started her on some antibiotics and took a blood and urine culture to be on the safe side. Hopefully it is nothing. All in all it was a really great day and a lot of progress was made.
I got to hold her today. Twice! And when Steve came from work he was able to hold her for the first time too. She also went most of the day without any pain medications. What a strong girl! Dad picked out a cute new cap for her to wear with butterflies. I think she likes it very much :) We were told she may be showing signs of possible infection so they started her on some antibiotics and took a blood and urine culture to be on the safe side. Hopefully it is nothing. All in all it was a really great day and a lot of progress was made.
Off Ventilation 4/17/2011
Allison is breathing all on her own now. She is such a strong girl to do all that work with just one lung! It is so nice to see the machines that surround her slowly dwindling in numbers. First they took away the Nitric Oxide machine which was dilating the blood vessels in her lungs for her. Next to go was a machine that gave her a drug called Dopamine that kept her blood pressure high enough. As her vitals stayed perfect through these changes, they began lowering the amount of help the ventilator gave her. Next to go was the photo therapy light she had for jaundice and a machine that administered a drug for pain called Fentanyl. And today they took her off the ventilator. What she is still hooked up to are a nasal cannula for oxygen, a suction tube for stomach secretions, and an IV of fluids, sugars, and fats for nutrition. She also receives small doses of Morphine for pain as needed.
Everyday getting to go in and see that one more thing has left her bedside and see how much better she looks is so encouraging. Each day she opens her eyes more and looks better in color than the day before. We can actually hear her little cry now too. The ventilator went down through her windpipe so she couldn't make any sound before. Who knew it could ever be exciting to hear your baby cry?! We are still waiting to be able to hold her, but it is looking like that day will be here soon. I figure it will only be that much more special since we had to wait.
Hoping we will have more exciting news soon. Until then continue to keep her in your thoughts as she heals.
Everyday getting to go in and see that one more thing has left her bedside and see how much better she looks is so encouraging. Each day she opens her eyes more and looks better in color than the day before. We can actually hear her little cry now too. The ventilator went down through her windpipe so she couldn't make any sound before. Who knew it could ever be exciting to hear your baby cry?! We are still waiting to be able to hold her, but it is looking like that day will be here soon. I figure it will only be that much more special since we had to wait.
Hoping we will have more exciting news soon. Until then continue to keep her in your thoughts as she heals.
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