Homecoming Pictures

First Day at Home

The day was hard for me (Gerri), but Gabriela is thriving. She is walking as she can and playing for short amounts of time before she lays down (on the floor or wherever) to rest a bit. Her fever is gone, no shortness of breath and her lips are a beautiful pink color! She has a great appetite, so hopefully that will help her gain some weight back. She is back to signing and trying to speak normally, except her voice is still pretty hoarse. She isn't quite as smiley as she was, but she grinned big when she saw her siblings last night. She slept for 12 hours in her bed without waking up and I slept a solid night too. This morning was tough trying to keep her from overdoing it or getting bumped (she is on sternum precautions for 6 weeks). Thankfully David was able to come home from work early to help out. I can't imagine how I would have made dinner tonight, so I am extremely grateful for the meal that was provided to us. Thank you! I've got a few ideas of how to make tomorrow go more smoothly. I'm sure each day will get easier as I get rested and organized and she get stronger. I'll post some pictures tomorrow after another night of sleep!

Going Home!

It is a little early to be going home, but we all agree (including doctors!) that this seems best for Gabi. She is most secure at home and she will get better rest where her food and surroundings are most familiar. She is taking a nap while the final details and tests are completed. We will likely make it home before bedtime tonight!

We can't say enough about the excellent care we received while we were here at the University of Minnesota, Amplatz Children's Hospital. We were so blessed by all the experience and expertise of the surgeons, doctors, nurses and other staff (especially the International Adoption Clinic). We thank God for His great provision of it all (this hospital just opened in April...perfect timing for us...as with everything else in this adoption journey).

We are thrilled to be past (hopefully) this big step in Gabriela's life. We are ready to settle down for a while. We truly thank you all for your prayer and support. The meals have been such a gift and your encouragement means so much to us. Thank you Grandpa and Yaya for spending the week (Happy Anniversary by the way!) with our other kids and for driving them back and forth daily to see us. We knew that this adoption would be way beyond our means in every way and that if God was leading us to move forward with it that He would need to provide in huge ways. There is absolutely no doubt about it...He did! We are filled with joy that our little girl is coming home!

One of the pictures from our recent photo shoot with Viveria Photography. (viveriaphotography.com)

Monday

We didn't have a good night of sleep (her IV was loud and troublesome), but Gabi still woke up this morning to eat some cheerios and sit up. She seems emotionally down and insecure, which I am sure is expected, but I am hopeful that getting her home will be the best medicine for her. We are waiting for the doctors to round now (it's a little later on this floor) so that we will know what the plan is for today.

Gabriela's BIG day!

Gabi had a very busy day today. She remained stable and was able to remove most of her medical accessories. She did so well with everything that she was moved to a regular medical/surgical floor late this afternoon. She was also able to have her cousins visit this evening (only siblings are allowed in the ICU) and now she will only have to be awakened for assessments approx. every 4 hours. If she continues to progress this well tomorrow we might be home sooner than we think.

Here are some photos of Gabi's great day:

She played with YaYa.

She got her chest tubes removed. Ouch!

(The man is Dr. St. Louis. He's the surgeon God used to reconstruct Gabi's heart.)

She ate some ice cream. Yum!

She got up out of bed.

(She should have gotten an award for the biggest rat's nest of hair on the back of her head!)

She took a few steps. (A huge accomplishment!)

She played with Mama.

She sat up to watch some football with Papa. (Her new room has a huge T.V.)

She's sleeping now.

Sunday

Gabi didn't sleep much last night, but is still doing very well. She is breathing with no oxygen or help. The plan for today is to introduce food, take out a few more tubes (chest drainage tubes and one IV), and get her up out of bed! Should be busy. It is so good to see her face, hear her talk and see her smile. Thanks again for praying.

First smile

Thank you God! So precious!

out!

Tube is out! She is doing great!

Saturday

We had our best night of sleep yet. Gabi was settled by about midnight and everything was quiet until about 4am, so we both got a nice chunk of sleep. We are excitedly anticipating what today will hold because Gabi has remained stable for quite a while and she is needing to be suctioned less. The nurse stopped her tube feeding in the night and has been slowly decreasing her sedation and pain medications allowing her to wake up. All of these things are in preparation for another try at taking her breathing tube out (extubation). Doctors are considering doing this today. We hope that this will happen, but we also hope that she is ready for it.

"Everything on earth lies at God's beck and call, and therefore he is well able to provide us the thing we long for if it seems good to Him to do so." - Lydia Brownback

Doing well again

Gabi has done much better since late this afternoon. She was much calmer and slept much of the evening. There is a plan to try to take her off of the ventilator completely again tomorrow, if possible. She is being weined from the machine and other medications during the night and hopefully she will be able to take a try at things on her own in the morning.

Good night.

Lots of suctioning

It was a busy morning. Gabi will need to stay on the ventilator for another day at least. She is doing well (initiating breaths on her own), but just can't seem to clear the yucky stuff that is in her lungs. She is needing to be suctioned often, which she really doesn't like. It looks like the fluid in her lungs is still coming from her perfusion injury (her lungs couldn't handle all that blood pumping into them because they were used to going without for so long). The extra fluid and gunk is still being produced by her lungs because of this injury and inflammation. Doctors are unsure why she is having so much trouble dealing with all this stuff in her lungs, whether it is because of other infection or disease process. We just have to be patient and see. Several cultures are coming back positive for little "bugs" (bacteria, yeast, etc.) that may have been dormant in her body but have now tried to attack her in her weakened state. Another echocardiogram was done this morning to make sure that her heart repair wasn't contributing to her lung trouble and it is not. Her repair looks "great" and her heart is doing well today to keep up with all the stress. Gabi could use some extra prayer for peace. She has been quite agitated and that makes it very hard for the staff to suction her and other procedures. When she fights them too much they have to give her more medication to help her relax and this in turn sets off a roller coaster of reaction to her heart rate, breathing, blood pressure, etc. It is a constant battle to keep everything within the best limits for her to rest and heal, but also to gradually allow her to move forward.

Thanks for your concern for her mama and papa too. I slept pretty well last night, a few longer chunks and I have been blessed with the ability to wake up quickly and fall back to sleep very quickly. David has been able to be here each day to give me breaks and keep me company. There are other families here going through much the same as us or worse, so we have been able to encourage one another. Jeremiah, Daniel, and Anna are doing very well with Grampa and Yaya and they have been able to visit daily as well.

All for now...thanks!

Morning

The night was really good. Gabi maintained her breathing and heart functions with the decreased help. Earlier this morning, the congestion in her lungs has been growing again unfortunately. She has had to be suctioned several times and still doesn't sound clear. It appears that the bleeding has stopped in her lungs, but there is just a lot of gunk in there that she can't seem to get out. This will likely keep her on the ventilator longer. With the increased suctioning, she has become more agitated and has needed up to 3 people to keep her still for procedures. With all this movement, there has been quite a bit more blood coming out of her chest tubes again (these tubes help to drain the fluid out of the area around her heart). She was fever free all night, but unfortunately it appears that her temp is climbing again too. We are thankful for her good night last night and have to be patient not to push her too quickly. She is a very strong little girl...just ask the nurses who have had to help hold her! We ask God to continue to give her this "fight" and we praise Him for each and every victory. The doctors should be around soon for rounds, so we'll see what they think.

One more step.

The respiratory doctor just turned the ventilator down one more notch! They also just decreased the heart medication just a tiny bit too! Go Gabi go!

Good news!

Gabi has been breathing over the ventilator quite a bit over the last hour. It seems that this is a sign that her lungs want to increase their workload. They are going to turn the machine down a setting and see if she can maintain. Her fever is lower, but not gone. David and I are taking turns resting and sitting with her. Hopefully we can continue to share more good news as the evening and night come.

Thank you God for these little successes!

quiet day

Anna came to see her sister this morning. Gabi opened her eyes when she heard her voice and took several breaths on her own.

So far today has been pretty quiet. Gabi is resting well. She is waking up on and off, but is comforted easily. Her heart has been beating on it's own without the pacer and her blood pressure is stable with the help of the medication (Epinephrine). Her lungs seem to be getting better, there is less bleeding and less volume needing to be suctioned out (hopefully a sign that the bleeding is almost done). The machine is still doing most of the work for her lungs as we try to let her rest and heal. If she continues to show positive signs over the course of the afternoon there is a chance that they will try again to very slowly decrease her settings on the ventilator and gradually see how her lungs tolerate the workload on their own again. Research is still being done about her secondary infection that was found in her lungs. Doctors say that this should not hold her back from moving forward as she could continue antibiotics for this infection at home as long as it is under control.

Second half was good.

After about 3am, Gabi's breathing became stable. She rested well and therefore I got a little more sleep too. Her nurse was a huge blessing...she had certain mannerisms that were similar to me, so she was able to calm Gabi easily after cares which allowed me to sleep through a few of them. She even pointed to a blanket one time that she wanted the nurse to use to cover her up. They started her on a few more antibiotics because she is still fighting a fever. The cultures are not back yet, but because of her condition they don't want to take a chance that any bug will get an advance on her. Her heart is tired again this morning, apparently, because she is relying on the pacer again to initiate the beats. We aren't sure what the plan will be for her yet...the doctors will be doing rounds soon. Thanks for praying her through the night. A little extra sleep and lack of excitement were a gift to both of us.

~Gerri

Ups and Downs

Gabi had a pretty good day today. She rested well having the machine help her breathe. We found out that there was evidence of a fungus in one the cultures of her lungs. (It is not likely that this was introduced into her lungs during surgery, but probably something that was lying dormant in her body and "came alive" during this period of stress because of the opportunity.) She now has to add an antibiotic onto all the other meds and fight off this infection. She still has some bleeding in her left lung and they are using suction to get this out as regularly as she will tolerate it.

Later they decreased some of her sedation medication because her blood pressure was too low. About that time it was noticed that Gabi's heart rate wasn't changing. It was staying exactly the same no matter if she was sleeping or upset. They started her on a heart pacer that would initiate a beat for her heart at a certain rate that was faster, hoping that would bring her blood pressure down. It would also give her heart a rest (it was thought that her heart might have some swelling, stress, etc from the reconstruction). The heart pacer didn't work and therefore they started her on another med to increase her heart rate and raise her blood pressure. This worked, but since then her temp is going back up and her breathing is getting irregular. It is such a delicate balance to keep all her systems up and running within safe parameters! Every time we think she is staying stable and starting to move forward, then something else starts reacting wrongly. That's all we know right now. Hopefully she will rest well tonight. Thanks for all your prayer and support today.

Another bronchoscopy

The pulmonologist just came in to take a look down in Gabi's lungs. They found that the site from where the biopsy was taken looks just fine, so there is no concern of bleeding from there. The right lung looks good, no bleeding. The left lung is where the bleeding is coming from. Because of Gabi's heart condition her lungs were not receiving all the blood/oxygen support that they needed for a long time. When her heart was repaired and began pumping normal amounts of blood, her lungs had a hard time handling it (her left lung specifically) and injury occurred (reprofusion injury), thus the bleeding. The best course of action is to keep her on the ventilator to let her lung heal and let her lungs try to take back over more slowly to make sure that her lungs can handle it. This is a secondary injury, so it won't affect her heart recovery...meaning that we should be able to take out her chest tubes (when the bleeding stops there) even if her lung is still recovering. They will test the blood that they removed from the lung to see if there is any infection as well.

Gabi's temp is still up, but hasn't increased. We are still unsure whether it is from infection or stress. Her other vital signs have been stable while she is resting. They just put in a feeding tube so that her body can get some protein to help with healing and give her strength. It looks like she may have to stay in the PICU for a few more days depending on how quickly she can move forward. Thanks again for praying!

Thank you

Thank you everyone for your kind thoughts and so much prayer. I also can't tell you how much we appreciate the meals for the rest of our family at home. Gabi had a hard night, but again as I said yesterday, things always look better when the sun comes up on a new day. Her fever has continued, but her arms and legs are very cold. They are putting her on a cooling blanket that they can control the temperature better. It seems that the bleeding from inside is trying to make it's way out (she has diarrhea now and it's being suctioned out of her stomach as well). She is still bleeding inside however. We are waiting for the cultures to come back so that they can start an antibiotic. She looks comfortable and that is so good to see.

Here are some pictures from earlier yesterday, before she started declining. She was feeling well enough to be held and play with her baby a little.

2:10am

Gabi is fully sedated so that her body can rest and so that she can not pull at any of her tubes (something she is famous for here now). The nurse is suctioning her lungs every hour and it appears that the bleeding inside has continued. She now has a fever of 102.9. Some blood was drawn out to be sent for cultures to determine the cause of infection. Her heart seems to be beating very fast so there is some concern about that as well. I wish that I had something better to say in this update. I am trying to rest as best as I can so that I can be available to help her as soon as she is awake again. God's peace is surely covering me.