Health Update - Week 7

February 22, 2005: Today is a day we have been waiting for Theresa's entire life! "Theresa's Team" agrees that it is time to send her home, and Friday will be the glorious day!!!

Yes, that is correct, you didn't misread it, THEY ARE PLANNING ON SENDING HER HOME FRIDAY!!!

It was suggested to us on Sunday, but we didn't share the news with anyone because EVERYONE had to agree, and we were waiting for that to occur. Miracle of miracles it did! I asked her surgeon (who had predicted 6 more weeks only last week or so if he was sure, and he said that Theresa surprised them.) So many of the nurses have called her the miracle baby, and we truly feel as though she is.

The neonatologist have been writing orders and getting things ready as though it was going to happen, but I really won't believe it until Theresa is in the carseat headed home on Friday. It does seem like it will happen though, Dr. Weisman told the team: "Not Saturday, not Monday - Friday!" and as soon as the orders got written lots of things started happening. There is a checklist a mile long, but at least I finally get to make a list about something positive and start working on it! There are many people to consult with, appointments to make, CPR classes to take, information to be learned, etc.

Theresa will be going home on a feeding pump and a pulse ox machine (to measure her blood oxygen level), but that is so much less equipment that we had originally thought. No oxygen, no respiratory care of any kind. Very few medications (really just 2 supplements and a diuretic). We are so pleased, but it is like winning the lottery. We are in such disbelief that it hasn't hit us yet. I don't think we reacted like they expected, because several times people have come by and told me, "if you're not ready, we can stall or delay it." It will sink in soon!

Overall, there isn't much more to report on Theresa. It took 2 attempts yesterday to get an MRI done on Theresa. The first one they did was invalid because the morphine took too long to take affect and she moved too much, so they repeated it later that evening with more success. Unfortunately, they had to sedate her quite a bit more, so they didn't discontinue her morphine today as planned since she'd had so many extra doses. Since yesterday was a holiday (President's Day), the MRI results were delayed in getting read, so we are still awaiting those.

February 23, 2005: The plan is still in motion. I got a lot completed on my checklist, but it still feels like there is so much more to do. I am much more calm and less in shock today as I get things done. She will have several appointments with 2 pediatricians, her surgeon Dr. Cass, cardiologists, and other specialists in the next few weeks and months.

The MRI results were back, and weren't quite as positive as we had hoped. The enlarged ventricles in her brain are still quite prominent, and it seems that her brain isn't completely filling the space in her skull that is should, and so there is a rim of fluid where the gap is. No one is sure whether or not that will correct itself over time, but when they actually came to assess Theresa (versus just looking at the MRI scans), they seemed to think it wasn't as bad as it sounded originally. Another group of doctors with a developmental center also came by to see her and make recommendations, but we are still waiting for their official assessment. Just one more thing for Theresa to overcome and surprise the doctors on, she has surpassed their expectations in so many other ways.

February 24, 2005: Another very busy day. Each consult brings more questions and things to do (which I enjoy doing since it helps me feel like I'm helping to get her home.) We took an infant CPR course last night, and Tim and I learned how to work her portable feeding pump today. It is small enough to be contained in a backpack type carrier, and can be battery operated for hours. The trickiest part is keeping the bag upright while traveling and making sure we programmed the pump correctly, and that we keep filling it every 4 hours since the milk will spoil if left out longer.

We also had to demonstrate that we could draw up her medications in a syringe and inject them into her feeding tube medication port. I felt like I was back in school! We have a binder of papers on Theresa that we have to learn before we can take her home. It's like the final exam of parenting (or, more accurately, the entrance exam!)

The Meyer Developmental Center team came by and spoke with us regarding their official diagnosis and recommendations. They feel that Theresa's pre-language and visual-perceptual skills are at or above her corrected age (since she was born early, they are comparing her to babies 2 weeks younger). This means that she looks at you and is starting to smile socially, look at objects, and "track" with her eyes. Her muscle tone in her neck and legs is behind, so they are going to have an occupational therapist work with her at the house each week, and teach us exercizes to do at home daily. Overall, they were very impressed that a baby who had come this far so quickly, had been on ECMO and "lost" the first 2 weeks of life, etc is doing so well developmentally. The physical delays can probably be overcome in time with help, and we will continue to work with her development in other ways as well. In fact, they said that having Nathaniel be so close in age would be a good motivator for her at home.

We are still struggling with her weight gain (she gains and loses to the point of evening out), so they increased her concentration more (though not the volume of feeding). It may affect her bowel movements (again with the pooping!) so that is something they will watch for. She will be monitored and weighed weekly at her local pediatrician's office.

February 25, 2005: TODAY IS THE DAY!!! We are getting the last minute things together to bring her home. It will most likely happen late this afternoon, and the home health care nurses will be at the house this evening and/or throughout the weekend to ensure that we are comfortable with all the aspects of her care. Though there probably won't be daily health updates, I will continue to update the website, especially with photos and news and results from doctor's appointments, etc.

Theresa is a true miracle baby (many of the doctors, nurses and staff have said so, and those who haven't said it in quite those terms are amazed at her progress, especially considering how grim her predicted outcome based on statistics was).

We feel that God has answered our prayers in leading us to Texas Children's Hospital and the wonderful doctors and staff who worked with her. He gave them the knowledge and wisdom to treat her many problems that arose, and guided the surgeons' hands. It was not an instant, miraculous healing, but the many small miracles we had hoped and prayed for that make it possible to bring her home weeks or even months early than we had imagined possible. There are still many obstacles to overcome, and we ask that you continue to keep her continued healing in your prayers and thoughts each day. Thank you for your part in helping her to gain better health and keeping us motivated to deal with all the challenges that arose along the way. We appreciate and love you. Whether or not we are related to you, are the best of friends, or have never met you and are linked through someone we do know - you are a part of Theresa's family and network of supportors, and for that we are forever grateful. Again, thank you, and God bless you.

February 26, 2005: The first full day to have 2 children at home! It almost seems surreal, probably due in part to the lack of sleep. Without the constant monitors that we are used to, it makes it hard to sleep without waking up to check on Theresa's respiratory rate, feeding machine, etc. We are still trying to regulate things, and get on a "schedule" so that someone can sleep, but it will take some time. There just seems to be a lot more to do (even the nurses didn't have to do everything, such as prepare the milk for the machine while preventing an 18 month old from trying to climb into the bassinet).

Nathaniel is still somewhat confused at exactly what Theresa is. For months, she was my growing belly, a baby doll, then a photograph on the mantle. Now, she is a real life crying, moving, creature that takes up a lot of time, and that can't play with him. He has tried to "share" his blocks and his blanket, which mainly consists of trying to throw these things on her while we try to block him without getting too upset at his attempts. He watches us, and wants to imitate what we do with her (put her pacifier in her mouth, touch her, talk to her) - it just seems that he can't regulate how soft or quiet he needs to be when interacting with her. He is also a bit jealous that she is using his Boppy pillow (that he hasn't even seen in 8 months) and that HIS grandparents are interested in holding her and can't hold him at the same time. Mom and Dad holding Theresa doesn't seem to bother him as much as when the grandparents do it. He has pointed out her hair, arms, ears, nose, eyes, feet, and toes and is becoming more gentle in touching her, but seems baffled when she moves or makes noise. The only thing we are being very stern about is when he touches her ND tube or any of the tubes which lead to her feeding pump. He signs and says "milk" when pointing to her bag, so he understands what is in it, just not why he can't touch it. He will touch it, and then wag his finger, and say "No, no, no!" It's cute, but we don't want to encourage it.

Overall, it has been a really great day having her home. She has adjusted seemingly well (they warned us that she might stay awake and cry all night since it is different and less noisy, or stimulating in other ways, but she has done quite well. She does enjoy being held (which is surprising, since she wasn't held too much in the NICU) and watching her brother's antics. She seems to be memorizing everything he is doing.

As far as her health is concerned, she hasn't had any major upsets. There were a couple of times in which she threw up (from her nose and mouth), but seemed to recover well and never choked. We suctioned her with a bulb syringe and watched her closely, but she did just fine. As we adjust to how to perfect filling the pump and not allowing any air in it, I think this will improve. It is a very different and more difficult pump to use than the one in the hospital, but it allows us (supposedly) to go 4 hours between refilling it.

February 27, 2005: What a difference getting some sleep makes! Tim's mom, Tim, and I took "shifts" during the night making sure Theresa was doing okay, and keeping her feeding pump filled. Although no one got a full night's sleep, just getting 4 hours of continuous sleep was very refreshing.

Theresa is doing fine, and we are adjusting more and more to her routine. We gave her the first "at home" bath in the sink (they sponge bathed her twice a week during the last couple of weeks in the hospital, but never set her in a tub). It took both of us to manuever around the pump and keep the tubing out of the water, and she did throw up once and pooped in the sink twice, but all in all it was a great experience!!!! :)

She is more alert, listens to everything that goes on and smiles more at all of us. It is easy to forget that we just spent nearly 7 weeks in the NICU because without looking at her scar, and ignoring her feeding tube (which is easy to do once you've looked at her long enough), she looks like a perfectly normal baby. It is such a relief to have some sense of normalcy again.

February 28, 2005: Tim's mom who was helping us with Nathaniel while Theresa was still in the hospital left today, and my grandmother returned to help us with our continuing adjustment. Nathaniel seems to be pleased to have more company (he assumes that it is all for him), and Theresa is enjoying being held by her great-grandmother. They warned us that a NICU baby would have trouble adjusting to home and would probably be cranky, not enjoy being held, etc. Theresa has defied the predictions yet again, as she seems to crave the touch and is adjusting better than the rest of us!

The only thing we are still waiting on is getting a syringe pump. They are better for babies like Theresa who haven't been gaining weight as well, because the fat from the milk rises to the top and is "forced" into the baby with the syringe (the pump is placed so that the opening is at the top and the fat goes in first).

Also, since it's a closed system, there won't be any air bubbles in it (or at least not as many as with the current bag pump) It was ordered before we left the hospital, but they didn't want to hold us up on going home before we received it, so we are now waiting at home. So far, no word either way.