Random - June10

Just wanted to update that Anna Grace seems to be doing fine from her cold, it is a huge blessing from the Lord. She had her last dose of Apsrin yesterday in preparation for her surgery - which is exciting and scary all at the same time. Exactly 2 weeks from today Anna Grace will be in surgery.

Something that I could really use some prayer about this week..... I developed a nasty infection - an infected milk duct and had to see the doctor on Tuesday and have it lanced & drained. So, during this awful procedure which they don't numb you for I decided that my time for nursing is over - I just can't do it anymore. So, I am on antibiotics for the infection and am no longer pumping... which for those of you who know me is quite a terrible task because I produce enough milk to feed a small orphanage. Needless to say these next few days for me are not going to be fun. Anna Grace has enough milk in the freezer to last us until we get to Charleston and then after her surgery I think it will be time to make the switch to formula. I have had guilt about this decision - but I am just turning that over to the Lord whenever it creeps up - which is frequently right now. I am praying that after Anna Grace's surgery she will not have Chylothorax again and can go to a regular baby formula as opposed to our not-so-favorite Portagen. She is almost 6 months old.... unbelivable I know....... she will be 6 months old on the 28th of this month. What a journey.

Well... I'd better run because my little one is waking up. Thank you for praying for us :)

Anna Grace - June 6

Just wanted to let you all know that we took Anna Grace to the doctor on Friday for them to listen to her lungs. Her lungs sounded clear (praise the Lord, truly), but she had broken out in a terrible rash. The rash started Friday morning so I'm thankful that we already had our appointment to see the doctor. The docotor suspected that the rash is either being caused from the virus or it is a reaction to the Amoxicillin she is on. So, he wants us to stop the antibiotic for the weekend, call him on Monday & and possibly restart again on Monday. If the rash comes back after we restart then we know it is a reaction to the antibiotic. As of today (Sunday) the rash is cleared up. Poor little thing...... I am happy to report that, although she cried during her examination at the doctor, that as soon as the exam was over Anna Grace was quite flirty with her doctor. She smiled at him and would say "ahhhh" and he would say it back and they did this back and forth together for at least 2 or 3 minutes. It was adorable and I think it was the first time she has ever been happy or pleasant at the doctor's office. Perhaps this is a trend..... I don't know, but it sure was nice for Mommy to be able to have a conversation with the doctor without Anna Grace screaming the whole time - it's really hard to concentrate when your baby is crying.

So, coming up this week.... we stop Anna Grace's asprin on Tuesday in preparation for her surgery. One of her daily medications is to take a half an asprin a day to keep her blood thin so as not to clog her shunt. Surgery is rapidly approaching.

Thank you for continuing to pray for us.

By His Grace I See

My sin is before me and by His grace alone I see it clearly. Why oh heart do you not want to be sorrowful and repent. I will plead with my Master to grant sorrow from deep within by the power of the Holy Spirit, and He will hear my cry. My flesh is powerful, but I have died to my flesh with Christ and have been raised with Christ as a new creature in Him. The Lord is my salvation. He will not abandon me. In Him alone I hope.

Anna Grace - June 2

So far today our little one is still coughing, but I haven't noticed any wheezing - which is a good sign. However, my little one has been very fussy today... could it be the cold, could it be an earache, could she be getting a tooth???? As it is with all mothers of babies so much of this job is a guessing game. I'm glad we are seeing the pediatrician on Friday to be sure there is nothing going on. I'll try to give her some tylenol at bedtime tonight, maybe that will help?????

So, other than Anna Grace being a tad fussier than normal today I have been trying to spend some time figuring out how to keep my 3 year old occupied sine we are in quarantine again. Cartoons all day everyday will just not work.

So.... we spent about an hour this morning playing in the sprinkler in the backyard, which turned into my 3 year old unhooking the sprinkler and spraying water direclty into his dirt pile which is used exclusively for his digging and dump trucks (so he wasn't ruining the grass or anything) anyway... water mixed with the dirt pile turns into a big sopping stomping mud puddle which my 3 year old played in happily by himself for at least 30 minutes. Mommy was happy that he was happy, but it was some work scrubbing all the red mud from him after all the fun was over.

What shall we do tomorrow??????

Anna Grace - June 1

Just wanted to let you know that we saw the cardiologist today. We weren't able to get a good echo of her heart because she was CRYING so hard, we also were not able to get a blood pressure on her because of the same reason. Her cardilolgist said today that in his 25 years of practice that Anna Grace is one of his more challenging patients. She has SUCH stranger anxiety that these visits are very difficult for her. One of the side effects from quarantine I suppose. We were able to get her O2 sat checked which was 83 today despite her cold and yucky cough which is a tremendous blessing. The doctor confirmed that if she is still sick within 10 days of surgery it will have to be postponed so we need to continue to pray that the Lord heals her little body of this virus quickly. We see her pediatricaian again on Friday for him to listen to her lungs to be sure there is no pneumonia setting in. In the mean time, we are just hanging out at the house.

Oh.... Anna Grace had her weight checked today and she weighed in at an even 14 pounds. Despite everything she continues to grow at a slow but steady rate. We are blessed. Thank you friends for traveling this journey with us and for continuing to pray for our Anna Grace.

Anna Grace Update - May 31

So, since we have only been in "partial quarantine" these last few weeks a yucky virus has gotten into our home. It is a cold virus and Mommy got it and then Zachary got it and despite our best efforts to wash hands, Anna Grace got it. She started with a yucky cough on Saturday which progressed on Sunday and caused us to take her to the pediatrician today (Monday). So far her lungs are clear of pneumonia - Praise the Lord - but we are on the watch for it over the next 72 hours or so. They have started her on antibiotics which she will begin today. The timing of this is pretty tricky, because if she is sick at all 10 days prior to her surgery (June24) then they will have to reschedule her surgery. So, please join us in praying that (1) this cold does not turn into pneumonia, (2) she is able to fight this cold and be completley done with it BEFORE the 10 day window which would require us to postpone her surgery.

Needless to say we are now back in 100% quarantine until after her surgery. I am a little sad about this, but see the importance of keeping our little one well so am willing to do whatever it takes.

Prayer warriors - we need you!

P.S. - We have a cardiologist appointment tomottorw (Tues) so please be praying that her echo tomorrow will show good heart function despite her cold & cough and that her O2 sats are still holding steady in the 70's.

Heart Angel Maia

Maia and her parents have been on my heart and mind. With her passing I have been thinking about her little life and the brief encounters we had with Maia and her Mommy at MUSC. I first met Maia and her Mommy while Anna Grace was in the PCICU at MUSC. I was there by myself in the PCICU waiting room - PCICU was on "lock-down" for one reason or another so me and all the other parents were in the PCICU waiting room just waiting until we could go back in and see our babies. In walks a beautiful woman with georgeous red hair pushing a stroller with a sweet sleeping little girl in the stroller. I was introdcued to the red headed lady, Shannon (maia's Mom) and she shared with me that they were on 7C (the step-down floor from the PCICU) but that the walls were closing in so she put Maia in a stroller and was strolling her around the hospital and took a walk up to the PCICU waiting area to talk with some other heart Moms. I remember looking at Maia and thinking she looked so perfect - so normal. Shannon was smiling and telling me about their heart journey with HLHS. Shannon was such an encouragement to me that day as Anna Grace laid in the PCICU after her Norwood. It truly was a blessing to me to meet her and Maia. Please continue to keep this sweet family in your prayers. Thank you friends!