Joanna Needs Prayer

Update....

In the last 20 minutes I have gotten phone calls about both Joanna and Rebecca.

Joanna-

The results of the head ultrasound show only a minor bleed. Therefore, nothing will be done to intervene. They will monitor closely and follow with another ultrasound. Her ventilator settings had to be increased a little today, but not too bad. She had one PICC placed in her left arm.

Rebecca-

She had 2 PICCs placed, one in her left leg and they had to shave part of her little head to place the second in her right scalp. She got 2 in case they had to give a drug that wouldn't be compatible to be ran in the other PICC. Her nurse said they have worked with her alot this afternoon and she is doing really well.

Praise God for AGAIN bringing us through another frightening several hours. We anticipate more ups and downs but gladly take any little victories we can.

Earlier this afternoon -

After a couple of remarkable days, we had another setback today. Early this morning when I was taking some milk to NICU, a Dr. told me Joanna had some thing going on they were trying to figure out. A couple of hours later she came to our room and told us they did an X-ray and found air outside of her lungs (pneumothorax) they stuck a needle in between her ribs to pull of the air and it seemed to correct the problem. Thinking she was doing fine, we went early to Children's around 8:00 to see Rebecca and to be there for Doctor rounds where the discuss the days plan. That happened around 9:30 and she is doing wonderful. While we were there she had the lights removed from her and she had her first bowel movement. She was also moving her arms and legs all over the place.

We returned back from Children's right at 11:00 when Jessica's pass said she had to be back. When we got back to her room our plan was to go right down to see Joanna. We were bombarded with several different staff and then the NICU Dr. showed up to give us an update on Joanna. He summarized the stuff I already mentioned then told us that during her Dr. rounds she appeared to have seizure like activity. It's not like adult seizures, babies do things differently. He said Joanna was kind of smacking her lips and doing a licking type motion. They gave her seizure medicine and he said it seemed to help. He also said there is a chance she was just licking the tube in her mouth. He also said her blood count was really low compared to the previous one. She has had an X-Ray of her abdomen and chest and there is no internal bleeding there. The fear is that she has bleeding in the brain. She will be getting another ultrasound of her head soon and we should have preliminary results this evening. Our heart sinks every time there is a knock on our door. Again, Rebecca is doing great and here is a video to prove it (top). Please keep praying for both of them but especially Joanna right now as we await her ultrasound results (bottom).

Two Amazing Days

At this time 2 nights ago we were sitting by Joanna praying that the Nitric Oxide would have the desired effects without the undesired side effects. Today, we are very happy to see that she has improved continually since we sat with her that night and the first ultrasound was negative for bleeding in the brain. She will have more scans as they remove the NO completely. She has been taken off of the Epinephrine and the Insulin that she had to be given because of her high blood sugar yesterday. She was on the light last night while we were there because of her jaundice but is now off of it. They are decreasing the Nitric Oxide every 3 hours by 1 point. At that rate if her numbers stay good she should be completely off of it by tomorrow night. Once she is off of it, she will be moved from the oscillator ventilator machine back to the normal ventilator. The oscillator ventilator is giving her 600 breaths per minute right now. It is a very high frequency machine that somehow works to help the lungs. Each time we go see her we have a little more reassurance God is working his miracles and giving her strength through this.

Rebecca is having excellent days also. As Jessica blogged, she got to go see her for the first time today since right after delivery. We talked with the cardiologists today while we were there and got a better understanding of her heart condition. They confirmed the defect was Pulmonary Valve Stenosis and Tricuspid Regurgitation, the same diagnosis as the fetal echo. Basically, the blood is supposed to go through the pulmonary valve to the lungs but her valve is not opening. At one point we thought the valve was missing but it is there, just not working. The short term treatment for this is medicine that is keeping the ductus arteriosus valve open which normally closes over time after a baby is delivered. This allows her blood to continue to the lungs kind of like a temporary bypass. The goal is to get to a point where she is big enough to have a balloon valvuloplasty procedure done which keeps the pulmonary valve open. While we were there today they put her under the light for jaundice also but this is no big deal. Tomorrow, she will get a PICC line which will be taking the place of the lines in her umbilical cord. The PICC is threaded through a vein to the heart but not into the heart. It will be her new line for fluids, medicine and what little nutrients she is getting before she gets her feeding tube. They explained there are some risks with that procedure as you can imagine, but they are minimal. Sissy will soon be getting one of these also. Just like Joanna, every minute spent with her makes us a little stronger knowing God is at work.

For those of you that watched The Office last week, I am doing my part in the milk production by acting like Kevin every once in a while. Tonight we are happy to report we have taken 2 bottles to NICU, both of which had only a few drops. I am the milk man, I deliver the milk. By the time the girls are ready for it, those drops will be combined to supply them what little they will require. We hope to ramp up production over the next few days to give both NICU's a good supply to start with. Mom is a pro and she is working diligently at this.

We plan to get Jessica discharged Thursday. She could go tomorrow but we decided to stay another day since Joanna is just down the hall. After that we are unsure of the plan. I think all of our plans will be written in pencil for the next 20+ years. It's tough, we are eager to get home to our girls there whom we miss dearly, but leaving Cincinnati without Joanna and Rebecca will be very difficult.

Some of Jessica's Castrale family came to visit today - Thanks Steve, Rose, Sue and Jane we were happy to see you.

I know I'm forgetting some details but it is getting late and there will be milk deliveries to be made tonight.

Mom's Update

Hey everyone, it's mom's time to update!!

First of all, thank you for ALL the prayers. You have no idea what comfort it has provided us.

Secondly, I am doing well. I know Brandon has been the blogger through all of this and has reported that mom is good but I know some wanted to hear it from me.

Up until today it was a strain to talk. My chest was very heavy feeling and it just took a lot to get words out. I have staples down my belly about 6 inches long. It looks a lot worse than it feels - only having to take pain meds every 4 hours. I am able to get out of bed on my own now and sit up for an extended periods of time. I have a lot more energy today and feel like I am on the road to recovery.

I got to go over and see Rebecca at Children's. This was the first time I had seen her since her birthday, and at that time it was right after surgery for about 10 min. She was beautiful. I will visit Joanna this evening after supper. I have been able to visit Joanna a few times each day as she is just down the hall from my room. Visits are very emotional. As they lay there so sick and helpless my heart aches to hold them. But I find comfort in knowing they are being held by someone greater than me. Brandon will send an update out tonight about how both have done today.

Brandon has been great! All that we are going through along with my hormones going crazy have caused me to have some breakdowns. No matter what I've said before, he is a wonderful husband!!

Plan is to be discharged from the hospital on Thursday. I am trying to get my milk to come in so until it does I will be staying up here in a hotel. Girls will hopefully be getting milk in a few days. They will start them off with very small amounts so once I get a supply I will be able to leave milk here and head back to Eville. Not sure how things will go after that. Plans will be made probably on a daily basis.

Again, thanks for all of the prayers - you have no idea what that means to us. I love reading the comments you are posting. It allows me to feel connected to our friends and family and not so alone during this scary time. Love you all.

Happy Birthday

Sorry for the delay in getting this up. I know there are people wondering. It's crazy how busy you can get with everything going on. I tried several times to do this today and actually had to keep re-doing it because things would update. Top 2 are Rebecca, bottom 2 are Joanna and yes, that is my wedding ring on Joanna's wrist.

Our girls are now 1 day old. Their names are Twin A - Joanna Shea and Twin B - Rebecca Sue.

Joanna Shea-

Things weren't looking too good for Joanna last night around 1:00am. The doctor came to our room and told us she hasn't been able to keep her oxygen levels up. The next and only other option was to put her on a Nitric Oxide gas to help her lungs. Not knowing how things were going to go, we went to be with her and she turned completely around in about an hour. When we got there, she was on 100% oxygen and she was in the 20% range for oxygen saturation in her blood. After being on the Nitric Oxide her levels started improving drastically. When she reached the 90% range, we came back to our room. I called down about 6:00 and she had been taken all of the way down to 26% oxygen being administered and her O2 saturation was in the 90's still. Now she is on just room air (21%) and her O2 sats are in the mid 90's. She had lines put into her umbilical cord so it was easier to draw samples and give her her fluids and medicines. Since that was placed, the one in her head was removed. Today, they are slowly weaning her off of some of her medicines and assistance to see how she reacts. She had an ultrasound on her head today because there have been babies with a side effect from the Nitric Oxide which is blood on the brain. We have not gotten the results of that scan yet. She also had to receive a blood transfusion because her red blood cell count was a little low and that's what carries her oxygen. So, just to help her out as much as possible we consented to give it to her. At our team meeting this morning at her bedside, the attending doctor said she is definitely the sickest baby in NICU. That is not something that you really want to hear about your little girl when she is less than 1 day old in a NICU at a University hospital. What he didn't know is there are more people praying for this little girl than he could ever imagine. That changes everything as we have already seen. She is doing amazing and is only going to get better!

Rebecca Sue-

This little girl is happy to now have a name, especially her middle name which is after her aunt on Jessica's side. She is such an awesome lady that has done so much for us. Rebecca is doing great also. She also received a blood transfusion today because she has had so much blood taken, she just needed some to replenish her volume. It is just going to be day to day with her too as she continues to grow. Rebecca has much less to tell about right now because she is doing better in comparison. Although she has needs now, her bigger days are probably ahead of her when her heart has to be fixed.

Visitors-

With all of the visitors today I have been in and out to see both of them numerous times. We appreciate everyone that has come to visit. It was especially helpful and supportive for the guys from Bethel to show up and pray with us. Our most special visitors were our other girls that we hadn't seen in several days. When we first told Katelyn yesterday that she had 2 little sisters she was pretty upset, she wanted 1 brother and 1 sister. She also has a different set of names, Addiebear and Grady. We are gently trying to convince her of their real names but I think we will agree that she can call them those names if she wants. Thank you mom for bringing them over. Alexis made several posters and other art for us with all of our names on them. It was tough with them leaving after such a short visit but we told them we had to stay here with the babies right now so they can get better then we could bring them home to play with us.

We probably can't fully comprehend the amount of people that are praying for Joanna and Rebecca right now. All we see are the results, and they are beautiful. Thank you Sue for the email last night. You don't know how much it meant, and the timing of it was most valuable.

Brandon and Jessica.

Praying for strength

We spent a few minutes with Twin B on her way out to Children's Hospital where she is in NICU. We just got back from NICU here to see Twin A. I wish we had names so we could refer to them by name. We hope to have that figured out soon. Twin A needs lots and lots of prayer. She has a tough road ahead of her as she has for many weeks. She is just so tiny and her little lungs are doing everything they can right now. Her nurse said she expects her to get worse before she gets better. She has a couple of other things going on physically but not as critical as her lungs. Mary and I will be going over to Children's Hospital a little later to check in on Twin B. Her lungs are in much better condition but is still on CPAP. They will begin evaluating her heart condition to see for sure what the issue is. They said it doesn't appear to be an immediate concern at this point. We are doing ok, considering everything that has happened. We pray that God will continue performing miracles and make our girls stronger every minute.

Our 2 Girls are here

Our 2 newest angels were born at 12:27 and doing ok. I was able to briefly see them when they went to NICU. Twin A - 1# 10 oz has underdeveloped lungs and was intubated, otherwise fine. For now she will be in this NICU. Twin B - 2# 4.8 oz is breathing on her own but has a heart murmur. She is being taken to Cincinnati Children's as planned to be evaluated for her heart condition. Before they take her they will bring her to recovery so we can see her. Here are their first pictures I was able to snap in the hall on their way to NICU. Jessica is very sore but doing just fine. Praise God they made it, and ask him for strength and healing!

Twins are coming now

Jessica is being taken to OR right now for emergency C-Section. The past couple of hours she has been having some bleeding and Twin A has just started showing some signs of distress as a result. They think the placenta is separating. Please pray for everything that is going on right now it is kind of chaotic. I was not able to go with her so I am waiting with my parents and Mary. I will post later as soon as I know something.

Brandon

Day 3

Today has been a great day. Our doctor came in first thing and told us they were going to stop the Mag Sulfate. He said based on the tracking of the contractions he expected them to continue and get more frequent. Once again, the doctor doesn't get to be right. She has had very few contractions throughout the day. She was able to get a shower this morning which made her feel tremendously better. She called our moms first thing this morning and gave them the information and left it up to them whether to come over or not. So, Mary and my parents came over and spent the afternoon with us. It was great to have someone else to talk to for a while. They are staying here in town tonight, hopefully they will have made the trip for nothing. We spent a while on baby names with no definite solutions. Please post any suggestions and we will take them into consideration. Thank you Aunt Sue for taking care of our precious little angels at home. We miss them already but know they are doing fine. I realized today that the Cardinals open the season here in Cincinnati on April 5th sooooo,,,,, we'll see.

Day 2

Hello Everyone, I FINALLY created one of these blog things. I have looked at many the past few years but always put off making one of my own. This one is obviously dedicated to our twin babies, so I won't discuss health care reform or the new iPad here.

Throughout the night the contractions pretty much went away completely but not without it's toll on Mom. The Magnesium Sulfate makes you sick, very hot, droggy and you can't eat. She had an ultrasound this morning and everything looks fine in there. This afternoon the contractions have started again but only a couple an hour. She will be taken off the Magnesium Sulfate in the morning since she has had the 2 steroid shots to help mature the babies' lungs. They say if the contractions start again they will not give any more Mag Sulfate but they have some other ways to try to stop them. The current weights are Twin A - 1 lb 14 oz and Twin B - 2 lb 3 oz and mom, well she wouldn't want me to tell.

Thanks Elo for covering my shift at work today.

I had some Chinese for lunch and here was my fortune from the cookie:

"An unexpected event will soon make your life more exciting"

Day 1

March 25, 2010

She has been getting drugs to stop contractions which were 2-3 minutes apart and somewhat intense but they have eased to anywhere from 5 to 10 minutes apart. No dilation and no thinning of the cervix. They are also giving steroids to help the babies’ lungs mature and antibiotics to fight potential infection. She will not leave here until she delivers, hopefully for babies’ sake that's a while. Either way, we will be in Cincinnati for several weeks. One thing we don't have to worry about is our care here. Several doctors and nurses of various specialties have been in and out since we arrived. We are in good hands.

As always we are very thankful for the thoughts, prayers and offers to help out with anything at home. Our girls are well taken care of there by family which makes that less of a worry.

Once I get hacked into the hospitals network I am going to be setting up a blog or something to make updating easier.

Thanks,
Brandon and Jessica

Going to Cincinnati

March 25, 2010

There's no easier way to put this, so Jessica had an abnormal leak today. She went to Methodist and her doctor said the fluid they saw yesterday was not as much today. He thinks there may be a chronic rupture of the sac so the fluid has been leaking out. She is being taken by ambulance to Cincinnati. The ambulance is because the liability of letting me drive her is too great I suppose. I am following her there. Her doctor thinks they may keep her until they are delivered however long that may be. She isn't having contractions and there doesn't appear to be any immediate concern or risk. More to follow after she is there and evaluated.

4D Ultrasound

March 24, 2010

Jessica was able to get into her OB/GYN today to get some 4D Ultrasound images of the twins - Thanks Jodie. We had tons of these with Kenlee but after dozens of scans, none of the twins. She was amazed at the amount of fluid in Twin A's sac. It measured more than ever before.

Fetal Care Day 2

March 9, 2010

On one hand we were hoping for Twin Twin Transfusion so there was a defined plan of treatment. We did not come away with that, only the still lingering question of not knowing what is going on and nothing can be done to help it at this point. One thing has changed from the past several weeks. Twin A, the smaller of the 2 has a very positive outlook with no obvious signs of trouble other than measuring a couple of weeks behind. We need to just keep ?her? in there. Twin B has the heart defect that is expected to worsen over time. The goal is to keep them in mommy until A is big enough to survive and B is big enough to handle a heart procedure if it needs it when born.

In the next few weeks we will be determining what hospital out of town we will deliver and may have to keep the twins while in NICU. In 2 weeks we will have another Echocardiogram done then another 2 weeks after that probably at the out of town hospital. Still, we remain faithful to a positive outcome and healing.

Thanks for ALL of the many prayers and support. It is greatly appreciated

Brandon and Jessica

Fetal Care Day 1

March 8, 2010

Today we had the Echocardiogram. They only looked at the hearts of the babies and they are both developing just fine. Only Twin B has a functional problem with a couple of valves. The cardiologist said the findings were consistent with TTTS but would be premature to diagnose that before tomorrows tests. IF it is TTTS (this is still hypothetical) and they perform the surgery, the heart problem usually corrects itself. Tomorrow we have an ultrasound at 8:30 and an MRI at 11:00. Then a couple of other consultation meetings before our team meeting at 2:00 which will put everything together for the diagnosis and treatment options. We will update everyone tomorrow after our 2:00 meeting.

Brandon and Jessica

Second Opinion

March 4, 2010

After much thought, research and discussion with different people we decided today we would rather have a second opinion about the Twin Twin Transfusion Syndrome. The more I read and see about this, the more I just feel we should be doing something more than just waiting to see what happens. If it is TTTS, to correct the issue, intervention has to be done by the 26th week and it is pushing that window. Plus, our doctor earlier told us it would be better for another set of eyes to look at it. After a brief misunderstanding, he graciously referred us to The Fetal Care Center of Cincinnati. I had already talked to them and the Children's Hospital of Philadelphia and based on the symptoms we had, they both suggested being checked further. Since Cincinnati was a short drive in comparison to Philadelphia and they were both very highly rated children's hospitals, we chose to go to Cincinnati. We were set up with an itinerary of appointments for Monday and Tuesday, March 8th and 9th.