Wow, it's been a while!
Juliette is home and thriving. She's 11.5 pounds and 22.25 inches long. She has physical and occupational therapy once a week, and therapists are impressed with her progress. She is just about on track for her adjusted age, 3 months.
Juliette is also working with feeding therapists , and I'm happy to report she only uses her gtube at night! We are slowly working to eliminate the gtube use entirely. Hooray!
Juliette's first Christmas is sure to be a Merry one!
It's been a crazy couple of days, so I am just getting to post this now...
After 134 days in the NICU, Juliette was FINALLY welcomed home on Thursday, October 3rd.
Juliette is doing so well at home so far, and Mommy and Daddy are over the moon!
Thank you all so much for your continued love, support, and positive thinking throughout this time. It has meant the world to Melissa, Ross, and the little warrior Juliette Jean!
Day 132 for Juliette today. We are happy to report she's been breathing COMPLETELY on her own since Sunday night. Wait until you see her beautiful face without all that extra "stuff."
It looks like Juliette will need to be fed over an hour via a pump, instead of 25 minute gravity feeds. Its seems that's what Juliette needs right now to keep her sugars regulated. There will be out patient followup with endocrinologists to determine when gravity feeds can start again.
There are rumors going around that Juliette may be home by this weekend...stay tuned!
Juliette is 4 weeks adjusted today, and 7 pounds 8 ounces!
The breathing tube is finally tube out. There was an attempt to extubate on Monday, but she had an enflamed airway and needed to be on steroids for a few days. But now she is doing great! Doctors are slowly weaning oxygen and Juliette may be able to come home on room air.
The last piece of the puzzle is to take care of what's called dumping protocol. Because Juliette's stomach was manipulated with her nissen, we have to be sure that Juliette doesn't "dump" her food too quickly, which would cause her sugars to drop too low. This protocol takes 3 days. As of now, the breastmilk goes right into Juliette's g-tube by gravity, and takes about 25 minutes. If it's determined her blood sugars get too low, there needs to be an adjustment in the length of each feeding, which shouldn't be too difficult.
We are almost there...Needless to say Mommy and Daddy can't wait to bring their baby girl home!
Juliette is 4 months old today!
Surgery went well. Our little fighter is tolerating her feeds through the g-tube, which is great. She's still in a little pain, so doctors are keeping her on the breathing tube to manage for a few more days. She is also on some pain medication, which makes Juliette a little groggy. Since she's still on IV fluids and not moving around too much, she's very swollen. Everything should get better in the next few days.
Doctors said that once the recovery process is over, all that's left is to figure out if Juliette needs to come home on oxygen and/or monitors. Mommy and Daddy just want their baby girl home...Whatever it takes!
Thanks for all your prayers... let's keep them coming during the final stretch!
Juliette is 7 pounds and 18.5 inches long!!!!!!
We finally have a surgery date set for Thursday at 8:30 am. Fingers crossed that the surgery goes smoothly. After the recovery period, if no new issues arise, Juliette FINALLY gets to come home!
The main goal after surgery will be to help Juliette to eat by mouth. We hope that the g-tube is only temporary. Juliette will continue to work with speech therapists on an out-patient basis, and Mommy and Daddy every day!
Juliette will hopefully also continue to receieve occupational and physical therapy at home. The doctors are concerned that Juliette's head circumference is only at the third percentile. This may be due to her PVL. Her brain is growing at a slower rate. It is our hope that with much love and therapy, Juliette will thrive and be the best little girl she can be. She already has a great deal of head control for a baby that is technically two and half weeks old!!
Thanks again for all the love, prayers and positive thinking. Let's keep it up for Baby J this week!
It's Juliette's 104th day in the NICU!
Just a quick update today. Juliette is 6 pounds 1 ounce and 17.5 inches long. We just found out today that Juliette has to be 3 kilos (6 pounds 9 ounces) in order to have her g-tube/nissen surgery. It's a little upsetting because that could take at least a week, but doctor knows best. It's so heartbreaking to watch her have these reflux episodes, so at this point we just can't wait to get the surgery over with and be on the road to recovery. We are told it generally takes babies just a few weeks to recover after this surgery, and since this is the only thing keeping Juliette in the hospital, we still have a glimmer of hope that she will be home by September's end. If not, hopefully our little angel will be home in early October. Fingers crossed!
The day is finally here...It's Juliette's due date! We are happy to report that Juliette weighs 5 pounds, 10 ounces. She is really getting chunky! It is also our 100th day in the NICU.
Juliette's eyes were checked again and there is continued improvement. The opthamologist is confident Juliette's sight will not be compromised. If anything, she will just wear adorable glasses one day!
After much consideration, Juliette will be undergoing what we hope will be her final surgery soon. Her reflux is worsening, and you can visibly see her in pain at certain times. We continue to worry that she will aspirate into her lungs, which would cause even more damage. We are also afraid she will not improve her bottle skills for fear of it hurting whenever she tries to swallow. The only thing that helps reflux is time, and we don't want to spend an unknown amount of additional months in the hospital.
Juliette will be getting a nissen, which is a tightening of the flap that connects the esophagus to the stomach. She will also be getting what we hope will be a temporary g-tube. This will allow Juliette to be fed straight to her stomach while she is still learning to eat by mouth. We can feed her at home with this device! It is our hope that she can continue working with speech therapists after discharge, and the g-tube can be removed sooner rather than later. With time, the risk of aspiration decreases as well, and we hope Juliette will be able to take all food and drinks by mouth one day!
Please keep Juliette in your prayers as she has her surgery next week....Hope for a speedy recovery so we can FINALLY bring our little miracle home!
Juliette is 5 pounds 4 ounces and 17 inches long!
Some good news to report:
-Pulmonary hypertension has been ruled out, thank goodness! Juliette's blood test came back with a level 13. 60 and above is worrisome, over 100 is a problem.
-Juliette's eyes were checked Thursday. The surgery was a success! She will have her eyes checked again this Thursday just to be sure there is continued improvement.
-Respiratory support remains minimal with Juliette on a 1 liter nasal cannula at 21% (which is room air.)
- Juliette's feeding tube was placed back in her stomach. She is still on continues feeds through her ng tube.
Some frustrating news:
Juliette continues to try bottling with her speech therapists at CHOP, with mixed results. Sometimes she can take about 10ccs of milk, other times her coordination is not good and it becomes unsafe. Reflux continues to be an issue as well. Doctors are afraid Juliette will end up with milk in her lungs, which is very dangerous. Feeding by mouth is the last hurdle we must conquer before Juliette can be discharged. There is talk of coming home with a feeding tube, but we are hoping it doesn't come to that.
Please keep your fingers crossed that Juliette will work out her feeding issues....August 30th (Friday) is our little girl's due date and we would love to bring her home soon!
So Juliette was transported back to CHOP and had her ROP surgery on Saturday morning. It seems that the surgery itself went well. The opthamologist will check Juliette's eyes for the next two weeks to be sure the laser worked. Fingers crossed!
Our poor angel had a little trouble recovering from the surgery respiratory wise. It took a little more time than ususal to get her breathing tube out. This, in combination with Juliette's history of desaturations (low blood oxygen concentration) when stressed, prompted doctors to perform a ct scan. The results showed moderate lung disease with beginning pulmonary hypertension. We always knew Juliette's lungs were compromised to some degree due to being a micropreemie, but we were also always told her lungs looked good considering. This new diagnosis is a bit frustrating, but we take comfort in knowing that Juliette is back in the best place possible.
We are told that her lung disease is watched very closely for the first two years of life, as Juliette's lungs continue to develop. She has to basically be put in a bubble. Every cold, virus, infection or stress can do major damage. Anyone who comes into contact with her must have a flu shot and use tons of Purell. But ultimately she can be okay.
The pulmonary hypertension (high blood pressure in the arteries of the lungs which makes the heart work harder) is also being watched closely. The neonatologist is glad it was found now, as it is still manageable. It is something Juliette will hopefully grow out of as long as we don't push her. She will have a blood test next week to learn more. For now, the best thing for Juliette is to put her feeding tube back into her intestines, so it bypasses her stomach and eliminates most of her reflux. The reflux may cause milk to get into her lungs, and that would cause more damage. Unfortunately, this delays Juliette from learning how to bottle feed and most likely means a longer hospital stay.
Today is day 90 in the NICU, and our journey will continue on for a while. Please continue to keep Juliette in your prayers. Our little fighter has overcome so much already, but still has a long road ahead.