Jamie was born on December 13, 2011, just a little over three months ago. She had a NICU stay at JDCH for 3 days shy of six weeks. Her omphalocele has been closed, but the omphalocele itself is about the size of an orange on her abomen. She still has Tetralogy of Fallot, and an appointment with Dr. Aguirre next Monday on the 26th, most likely to schedule her heart surgery to fix her VSD, which is pretty big. It has already been delayed once, since at her last visit on March 1st, they found that she has an aortopulmonary collateral vein, which is helping supply her lungs with enough oxygen. Her saturation at her last appointment was still at 98-100%, so surgery was delayed for another month to let her grow. A few days after her appointment, we started noticing she was getting blue around the lips, nothing in her fingers or toes yet, and no "tet spell", but we are pretty confident that the time has come to set a date. Thinking it will be in April sometime, not sure when. We have to take her in to meet with the surgeon (Dr. Scholl).
We were using Facebook to update family and friends, as well as posting pictures of Jamie's progress. The listing of the posts are below:
December 12, 2011
Excited to meet baby Jamie tomorrow morning! C-section at 9:30am. Nervous / scared / uncertain about her future. We leave her in the capable hands of God and her Drs and surgeons at Joe DiMaggio. More details as we find them out.
December 13, 2011
Jamie is doing well. She is off of the oxygen. Dr Long painted Silvadine on her Omphalocele to keep infection away and keep the sac that is holding most of her liver and intestines safe until the Drs figure out the plan of attack. Her Omphaolocele is rather large at 9cm in diameter. She is getting a central line put in right now, but they couldn't find a vein to work so they will try again tomorrow. Her heart condition is doing better than I expected since she doesn't need O2 nor did she need the medicine to help her pulmonary tract receive enough blood. She did pee and poo a little so they said they was good for her renal condition but they will have the renal ultrasound read in the morning to confirm. They are also going to do some more genetic testing in the morning including an ultrasound of her brain. That is all I can think of for her update. Tara is doing well and visited Jamie this evening in a wheelchair. She is on ice chips and clear liquids for another day. Thanks again for everyone's support, Jamie, Tara, Christie and I really appreciate it. Tara is in room 248 and Jamie is in NICU A, both in Memorial Regional/Joe DiMaggio Children's Hospital.
December 14th, 2011 10:29 am
We just received a call from the NICU nurse stating that the Pediatric surgeon will perform surgery on Jamie this morning. We have to sign the consent forms shortly. I will post as the info comes in.
December 14th, 2011 10:35 am
Just found out that Jamie will be going into surgery sometime this morning for her omphalocele. We will be heading over to the NICU shortly to talk to the pediatric surgeon and to sign consent forms. Please continue to pray for our little girl.
December 14th, 2011 4:38 pm
Jamie is out of surgery. Dr Long said she did well and that her whole liver was outside her body. She put as much back in her abdomen as possible today without compacting the others organs. The next two days will be very critical due to the threat of swelling that could damage blood flow to any of the organs. She looks good but is on a respirator for the next week or so and is paralyzed artificially so she won't damage the repair. She might need a blood transfusion since her blood count is expected to lower. We will get to see her again after 6 or so.
December 15, 2011 10:37 pm
Baby Jamie today after her partial closure of her giant omphalocele. She is on a jet respirator that makes her breath 420 times per minute. One lobe of her lung is collapsed after last night and they are trying to have it inflated tomorrow. She is making urine very good today after they put a cath in. Her "O" is looking good today as can be told by its color and size. Her left middle toe is badly bruised and looks way different from the others but they are trying to find other places to put her IV and to get her blood gasses from. She is on 4% O2 over regular air tonight. They are allowing her to stay off of the meds that keep her paralyzed for now. If she start moving around and messing with her wound then they will have to put her back on. The giant heart in the picture is where her open wound from the surgery is so that we wouldn't make anyone uncomfortable. They put a arterial line in today to get a better blood pressure on her since the cuff was reading significantly different depending on the location they put it. She is starting to get puffy which was expected and is gaining water weight to bring her to 3.3 kilos (close to 7 lbs). She has so many things attached and reading and it looks overwhelming but she is doing well despite all of the smaller setbacks she had this morning. It has been an absolutely emotional day and a half but things are still looking upward. Hang in there Jamie, I know you can do it, you are a strong little girl.
Tara was discharged today with the Dr saying she was doing great and that her incision was healing faster than expected. 2.5 days for a c-section, so Tara is one strong cookie. She is pumping every three hours to bank enough for Jamie when she is ready for feeds.
Our social worker contacted us today and we received great news from her, they approved a room in the Connie Clubhouse that is basically a hotel room that we can stay in free of charge for a week at a time. This will allow our family and friends a place to meet before or after visiting and for Tara, Christie and I to have respite from all of the crazy ness of the hospital. She also cannot drive until told she can so the clubhouse will be soo great to get to see our child at any time we want. We have some other good news from her but I will wait til it is definate.
For our family and friends that would like to visit, there are no visitors between 6:30-7:30 am or pm. Other than that just make a call to mom or dad to make sure we will be around to let you in since only moms and dads can bring in visitors. Also you must fill out a signs and symptoms checklist that makes sure you aren't contagious.
Thanks for all your thoughts and prayers! She still needs them. I cannot believe the support and prayers I have seen for our little angel coming in from all over.
I (we) have to say Joe DiMaggio Children's hospital has been awesome. They are so kind and compasssionate everywhere we turn. They are willing to do just about anything for us anywhere we turn. I am thoroughly impressed with not only Jamie's care but our entire family's care.
December 16th, 2011 9:40pm
Jamie had a good day overall. Her right lung reinflated and is starting to slowly ween off of the jet respirator so that she can be on the standard respirator. Her surgeon Dr Long came to talk to us and noted that her incision looks good and that she may end up with a somewhat normal looking belly button after this is all over (it's a small thing but makes the future brighter). Her infection in her stomach sounds like it is starting to go away but the cultures will be back tomorrow to confirm. They have started weening her from her blood pressure medication, she was at a dose of 10 this morning and is now on 5 and they can take her off of it at 3. She has a defined reddish hue on her belly where everything was tugged and moved around during surgery. Above and below that she has the slight jauntice color but does not need the UV light at this time.
Tara is doing great and has been out pumping away. All the nurses are surprised how well she is doing. It is so important that she can pump b-milk for Jamie since her insides will have so many issues. They really make it easy here at Joe D for her to pump. They provide all the bottles, supplies, pump, etc.
Christie is staying with us at the Conine Clubhouse and it was nice to have some family time. We look forward to more of that tomorrow. Tara and I came to the lobby to have a date night consisting of sharing a piece of chocolate cake and writing this update.
December 17th, 2011 9:51pm
Another positive day. She is off the jet respirator and back on the standard one with room air, no additional O2. She is moving all around and very active. They had to restrain her since they wanted her hands off her open wound. This stinks to see since she wants to just go. The Drs are positive on their outlook. Her catheter was taken out and she made two small poops! Yay! That means her intestines have begun to work again. Her blood gasses were off this evening after the respirator swap, so I wouldn't be surprised if the jet was placed back on tonight even though they want to ween her completely
December 19th, 2011 9:32pm
Jamie's looking good without that respirator! She is on the CPap machine for just a little help for her lungs. Her incision looks good and Dr Long gave a good report today as she admired her work. Tara got to change a dirty diaper today, which is an awesome accomplishment, because that means everything has been kickstarted down there. She has been alternating between resting and wide awake and looking all around. They took her Arterial line out today so its back to the cuff for reading blood pressure. The nurses had to put her PICC line reinserted since the tape started loosening and the line started pulling out. The NEERS sensors, that measured blood flow across the head and kidneys, have been removed. Overall, Jamie had another wonderful day at Joe D. I can't say enough good things about this hospital.
Tara figured out what every three hours means. I love you babe!
Christie and g-ma came to visit today and brought pizza. I sat at work for a full day and it felt like an eternity but I received good news from Tara all day.
12-20-11 8:35pm
Jamie has a tattoo as you can see in the picture. See is basically status quo for the day. She is resting comfortably most of the day. Dr long's PA came in and said she looked good and that her bowels are still not ready for milk, so more IV lipids and TPN. We heard her cry for the first time that I can remember except for right after birth. I got the chance to change her diaper early this morning. It's the little things that make me happy. She had a good day though and she has made steady progress every day so far.
Tara ended up with a stomach bug and has stayed away from Jamie since this morning. Hopefully she will feel better in the morning.
We will be staying in the clubhouse for Christmas since they were able to keep us for one more week here. They have made us feel so good here and we have made it our home away from home.
1-1-12 8:36pm
Jamie's PICC line is out, all she has left is the feed tube! Also gave b-feeding a try and she did great. Taking that part slow which is hard but we will do what is best.
1-5-12 8:34pm
Jamie moved today to the D-room (discharge room). Dr Long said she is doing amazingly wonderful and that as soon as she can gain weight consistently then she might go home. She still has sensors and an NG tube in her nose for feeding. Tara has been starting to B-Feed and is up to about four times a day. In between those feeds they are giving her b-milk through the tube for one hour then a two hour break. She hadn't known what being hungry was until they took her off the continuous feeds.
Her belly is looking great! The wound is the shape of an "L" about 2.5" x 2.5" but is healing great. All her internal functions have been working like they should.
As a side note, all the scrubbing in to see her has done a number on our forearms to our hands. Christie has it the worst and anything I put on it hurts her more.
There was a baby boy named Bernard two spots down from Jamie that had been having the worst time the past week or so. Baby Bernard earned his angel wings today after a hard first couple of weeks of life. This event just makes me think how thankful we are to have two wonderful daughters that are so well loved. I would have never expected to see Jamie doing so well at 24 days old.
Thank you to all of those that have helped us out while dealing with Jamie! Mom and Dad for driving Christie around town and to and from school, Randy and Charles for mowing the lawn, Barbara and Martin for all the clothes for Jamie, all the guys at work who have helped us in so many ways, and all our family and friends who have kept us sane by visiting, praying, words of encouragement, etc.
1-7-12 9:56pm
Jamie's new private room with a view in the NICU. She moved here this evening. It creeps us out a little knowing she will be alone but the nurses get all of the vitals/alarms sent to their portable phones. She can still be discharged from here but we still don't know how long she will be here. She has been status quo for the last couple of days, but hasn't gained much weight (17 grams today).
1-13-12 6:41am
Our baby burrito Jamie on her one month birthday. She is doing well in the new NICU room. She still must be more consistent in her feeding and weight gain. She is on a 1-1 feeding schedule (b-feed/tube feed) after briefly trying 2-1 for one day this week. They are proactively treating her for conjunctivitis. Besides that she is status quo for the week.
Our time at the Conine Clubhouse has expired so we (Tara, Christie, and myself) have to move home this morning. At least we can sleep on the couch in Jamie's new room.
I still can't believe our baby is a month old already. It has been an exhausting month for us but knowing we have a bright future with her makes it all worth it.
1-17-12 9:59pm
Jamie & Christie hanging out.
Little J is getting big at 8 lbs. She had an EKG yesterday that she cried through for an hour and a half. The cardiologist called and said that the narrowing of her pulmonary valve was normal and expected. He would still like her to have her heart repair in about two months.
Jamie's feeds have been up and down but when Tara feeds her she seems to do better. We hope for her to get off the tube so she can come home.
1-20-12 7:08am
JAMIE IS COMING HOME TOMORROW MORNING!!
1-27-12 7:11am
Jamie made it home last Saturday from the NICU! More pictures to come...
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